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TTC with chronic illness

(18 Posts)
stitchwitch84 Tue 05-Feb-19 10:06:39

I had a look but couldn't see another thread on this topic.

I'm TTC #1 whilst simultaneously enduring Chronic Fatigue Syndrome/fibromyalgia and possible Ehlers-Danlos too. I am managing it fairly** well, but I'm coming up against one distinct problem - DTD absolutely knackers me! I hurt all over and am exhausted for at least two days afterwards! (It's kind of embarrassing and frustrating but also kind of funny!)

Anyway, I was wondering if anyone else is TTC with a chronic condition of some sort? Chronic solidarity!

ComeMonday Tue 05-Feb-19 10:24:35

OP I am so sorry you are dealing with chronic illness. It’s the worst. However — and I say this with as much genuine sensitivity and empathy as I possibly can— are you sure you are able right now to take on the demands of motherhood? Having sex is not even 1/100000 of the energy and strength required to take care of a child properly, or even withstand a pregnancy. Does your DH work? Once the child arrives it sounds like you would need someone with you most or all of the time. Parenthood is exhausting for women who are healthy and fit. For the rest of us it’s grueling. If having sex exhausts you for days I think you may need to postpone parenthood and focus on things you may be able to do to improve your physical well being in the meantime.

stitchwitch84 Tue 05-Feb-19 10:57:46

@ComeMonday For various reasons which are too complicated and personal to go into, yes, this is the right time. I do appreciate your questioning though, as it is a perfectly reasonable point to make, and believe me, it's at the top of our minds too.

joylondon Tue 05-Feb-19 19:40:31

@stitchwitch84 we spoke briefly about this on another thread 😊 thanks for setting this one up. 👍🏻 how are you doing? X

stitchwitch84 Tue 05-Feb-19 19:45:19

Hi @joylondon I was hoping you'd join this thread! Things are well, thank you. I'm managing the CFS quite successfully atm, and I'm currently working on a way of pacing myself so that my heart rate doesn't get too high, which should hopefully help with avoiding the dread Post-Exertional Malaise! AF is just ending so we are back in the race again this month! I'm really hopeful that, if I do get pregnant, the same thing will happen as happened before my MC in November, and my energy levels will spike right back up again! I know that my CFS is quite strongly hormonal so I'm really praying that pregnancy hormones might kick the CFS into touch permanently (or at least semi-permanently!)

How are you doing? Are you feeling the same sort of anxiety re conceiving in a chronic pain/illness situation as I am?

GoodStuffAnnie Tue 05-Feb-19 19:53:12

I think it’s a great idea. I had chronic back pain and was off work for 5 years then had ds. He gave me a new lease of life and focus. And my back got better and better. Good luck!!

Bambamber Tue 05-Feb-19 22:08:48

I have the same conditions although not formally diagnosed with EDS, just HMS. We don't push it with how often we have sex, I'm happy if we have sex at least once around ovulation. If I'm particularly tired or in pain and it's my fertile week, we just keep things short and sweet to avoid too much exertion and plenty of rest afterwards. A nice hot bath with Epsom salts always helps

FairyLightFiend Tue 05-Feb-19 22:16:09

I’ve found my people! I have CFS and we’re starting to TTC, although I’ve been so knackered with a chest infection lately that we’ve hardly been in the game. I’m SO anxious about making the decision to TTC and am starting to feel that it’s now or never (I’m mid 30s). I’d love to know how others in a similar situation are feeling about the thought of having a baby when you have a chronic health condition. (I hope I’m not hijacking your thread OP!)

stitchwitch84 Wed 06-Feb-19 08:19:16

I hope I’m not hijacking your thread OP!

My goodness, no - this is what I started this thread for! I admit I'm pretty apprehensive about the future. In my one pregnancy I felt so much better than usual, so I'm hopeful that hormonal factors might make things easier for me (as in, basically getting rid of the CFS!) but there's no guarantee. My husband is a lot older than me, and I want to spare him too much childcare burden, but we both really want children together!

I'm finding yoga is helping me generally with pain and with fitness, and I'm trying out that pacing thing where you try not to let your heart rate go higher than a certain level, which is supposed to reduce post-exertional malaise. I think I may have overdone it yesterday, but it's all a learning curve.

Welcome @Bambamber @FairyLightFiend and thank you got your positive comments @GoodStuffAnnie!

workinprogressmum Wed 06-Feb-19 13:34:08

I am nearly recovered from CFS. 65-85% percent well. I already have one child and hoping to have number 2. I will say that I slightly agree with the person who says that having sex requires much less energy than parenting. Parenting is absolutely wonderful but not without its drawbacks. If you have a support network things will be easier. Your sleep will be disrupted for years. My son is 4.5 and an early bird. If he sleeps past 6 it's a lie in and he gets up several times in the night sometimes. You may experience anxiety / worry about your child which can exacerbate symptoms. I was bedbound by the time my son was a year old. "parenting" was cuddles in bed with the TV on and my husband had to work from home to care for us both. Not to scare you off but I think it's best to know what it can be like!

There are lots of mum's with chronic illness on Instagram which helped me!

cakesandphotos Wed 06-Feb-19 15:38:08

I have rheumatoid arthritis which was well managed until I came off meds to TTC. 3 months of being off meds then 18 months TTC and it was bloody tough. I then got pregnant and didn’t go into remission like 90% of women do. DS is 1 on Saturday. So although I’m not going through it now, I’ve been there, it’s really hard but it’s so worth it!

Make sure you talk to your specialist, keep them up to date and be honest if you’re struggling

Keyboard91 Wed 06-Feb-19 16:09:07

Hi, can I join you guys? TTC #1.

I have a rare neuromuscular disease called hypokpp. I’ve had to come off all my meds, in addition to working full time and DTD which is tough going, but it will be worth it ❤️

Waiting for my first bleed having suffered an early miscarriage last week. I only made it to 6 weeks but felt so much better during that time - it’s a known thing that many people with inflammatory conditions see a decrease in symptoms according to my neurologist. So fingers crossed that happens again! Xx

joylondon Wed 06-Feb-19 16:59:48

Welcome @Keyboard91 @cakesandphotos @workinprogressmum !

@stitchwitch84 this is so helpful... I'm not in contact with anyone else with chronic pain, never mind chronic pain and TTC.

My pain is pretty bad these days, I'm struggling to manage my job. Feeling really low about that, and just low in general because of so many bad days. It's something that's hard to explain to people - the emotional/psychological toll of chronic pain.

joylondon Wed 06-Feb-19 17:01:25

@Keyboard91 really sorry to hear about your MC, that is crushing 😞 can't imagine how hard. Hope it's not long before you get another BFP

stitchwitch84 Fri 15-Feb-19 10:40:18

Well, we are into the TWW once more. My good news is that my chronic fatigue and pain are well under control atm and I've got a job! Only part time at a local shop but it's a good thing and I'm pleased. I'm going to see how I cope with pt hours and somewhat physical work but I'm hopeful that it'll be good.

Trying to ignore the TWW for now, but I know I'll start obsessing in a week or so! 😆 my husband is v positive this month, which doesn't mean anything of course but it's nice to see him so excited.

How are you all doing on your TTC journeys?

stitchwitch84 Mon 29-Apr-19 13:26:47

How is everyone getting on?

I've not been on this thread as nothing to report, but this month I have my BFP! And since finding out, I've passed out on the landing (smashed our laundry bin 😆🤦‍♀️) and went on to have the worst stomach bug I think I've ever had. I lost 4lb on Saturday!

But as of Saturday, baby is still with us. I'm only 5 weeks gone so it's still very early, but I can't help but feel that our wee embryo has put up with an awful lot of stuff so far, so I get a sense that it's fairly tough.

Chronic fatigue has been clearing up for the past couple of months, to be replaced by baby fatigue (which is definitely different and a lot more manageable!)

Baby dust all round xx

PlanBea Tue 30-Apr-19 23:52:36

Congratulations on your BFP! I'd love to hear how your pregnancy journey goes.

I have endometriosis and fibromyalgia, I've been off the pill for about 5 months and I've not yet ovulated (temping/tracking CM). I'm nervous about a lot of things at the moment, like if we'll ever get a fertile window! I'm nervous as to how I'll cope without my medication one I am pregnant, as I'm on tapentadol and mefenamic acid, both not to be used in pregnancy. Anyone have any coping mechanisms they can share?

Adoremygirls319 Wed 01-May-19 12:07:45

Hi,
I have 3 little girls, oldest 6, youngest 1. Have Fibromyalgia and arthritis, have had widespread pain/ exhaustion since 2015, finally diagnosed after having my youngest, in 2018.
I appreciate there are varying levels of fibro etc, but all I can share is my experience.
I am completely exhausted , the difference between being pregnant/ looking after my first when I wasn't suffering, to the experience of carrying/delivering/feeding my youngest is significant. The feeding nearly broke me actually... but she was a crap feeder and cluster fed every hour.

I am so lucky that my husband is fully supportive, and helps out with so much. I also see my mum most days, albeit only for a few hours as i have to factor in nursery/school runs.

I feel really guilty sometimes, especially with my 6 year old, as she's definitely at the age where she could suss that I may be suffering ... BUT I honestly think that's my mum guilt and actually if you asked them they have a lovely life. I want them to grow up to be kind/ empathetic children... but equally I want them to be completely unaware when I suffer, as their childhood is so precious and should be utterly carefree.

I will say that I honestly don't know what I'd do without them. By just being my lovely girls, they give me so much positive energy, love and laughter and truly (for me) they give such strength and purpose !

I wish you all the best and I'm sure you'll be a fantastic mum. It's amazing where you find strength when it's comes to your babies. It's hard, but I wouldn't change a thing.
flowers

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